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Chapter XXVI - Health Insurance Portability and Accountability Act in Research

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The U.S. Congress passed the Health Insurance Portability and Accountability Act (HIPAA) in 1996 to protect health insurance coverage as a worker changes employment; to reduce fraud; and to establish national standards for electronic healthcare transactions. Also reflected in HIPAA is a concern for the privacy of a person and the confidentiality of his/her health information.

Each use or disclosure of PHI from a database or repository for research purposes is considered a separate research activity and also requires written authorization or an IRBapproved waiver.

Research-related treatment cannot be conditioned on participation in future unspecified research, such as the collection and storage of data/samples for future unspecified research, (45 CFR 164.508).

Requesting authorization from a research participant for the use or disclosure of his/her data/specimens for current or future specified research is permitted if that future research is required to meet the objectives of the protocol under review and is described in the protocol.

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